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Thread: It just keeps on giving

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    Default It just keeps on giving

    I had my rheumatology appointment last week and it was fantastic……..I didn’t see Mr. Insensitive, I saw the Head/Guru of the Department.
    I will go back to the beginning of this year though.

    Some of you may have noticed that I mentioned in some other threads that my liver test results were getting higher and higher than normal. Since January the ALT, AST, T PROTEIN, S GLOBULIN & T-BILI have been increasing each month over/above the normal averages (they were within normal in December). My ESR, PLATELETS, WHITE CELLS & Neutrophils have also gone up higher than the normal ranges, but they have always been above the normal range anyway.

    By May (after they were higher again, than Aprils) my GP and also my mum said that I should email the results to the rheumatology clinic and see what they want to do. My GP suggested that they may need to reduce the MTX or even change me over to a different med. I emailed the results through and the Head Rheumy phoned me and said that the results are okay for now, they are only double what the normal should be and they really start to worry when they get to triple the amount over the average. As I had an appointment at the end of June and another blood test prior to then, she said that she would personally keep an eye on the results and even sit in on my end of June appointment (if she had time).

    She asked if there was anything different that I had been doing since January, some different foods etc, that I haven’t had up until this time. Well, when I saw Mr. Insensitive in December, I asked him about multi vitamins and he said go ahead, the dosage in the multi vitamins is not enough to affect the immune system in any way but to remember not to take them on the day of taking the MTX if the multi vitamins have folate in them……….....So I stopped the multi vitamins after speaking to the Head Rheumy prior to my June bloods.

    Fast forward to June appointment…… A 9.45am appointment normally gets me to see someone at about 11.00am. I walk in to the Rheumatology Clinic and let the front desk know I am there then proceed to sit down with my book and bottle of water for the two hour wait. Just sat down and I get called in to the first room and I was just thinking….....okay, so they need my new medicare number or something or are updating their records....... when the lady who called me in says, I am Dr. Hall, we spoke on the phone and I will be overseeing your care from now on.

    Oh my, my heart started pounding faster and faster thinking something must be worse with my blood results, and no Mr. Insensitive, just her. She was wonderful. I was with her for about 40 minutes and she answered many, many questions……….and my blood test results (apart from ESR, White Cells Etc) where all back to within normal range ……..it was the multi vitamins that were doing it. She said that she has only seen this happen once before……..yep, it had to be me……I’ve told you before…..I am just wired wrong. So, no more multi vitamins for me.

    I got sent for an xray on my hands because they are still giving me grief and the first joints in my fingers (closest to the fingernails) have these boney nodule type things on them that are really painful when touched or if they knock something…………and here we go again with the wiring……..I now have Osteoarthritis. So that’s now WG, RA, MCTD & OA……and they ruled out Lymphocytic Leukemia last year. I have now started on 400mg of plaquenil per day for the joint pain. Like MTX, it takes about 4 weeks or so to start working. So far, no side effects which is something to be thankful for.

    I also have a ganglion cyst on the top of my wrist which has been there for many many years and this also causes pain in to my fingers and hand. In March, I awoke in the middle of the night with a totally frozen right foot. I just couldn’t get it warm. Three socks on it and lots of rubbing, I finally fell back to sleep only to wake up with a swollen foot around the inside ankle and a big lump just above my inside ankle. My GP said it looks to be another ganglion cyst accept that it is squishy. It is more like a fluid filled cyst than a ganglion. My GP didn’t want to touch it but suggested I keep it strapped and rested as much as possible until my next Rheumy appointment. I showed this to Dr. Hall and she said that they are just something that can occur with vasculitis (a type of bursitis of the Achilles and posterior tendons) and it should go down with time and “RICE”……...…yep it just keeps on giving


    Answers to some questions:-
    It is cold and flu season here at the moment………..No to the flu injection, you can have it if you want too but it will not be at my recommendation.
    What to do in the event of a cold/flu……..if it is only a runny nose and a slight cough, probably nothing because it will be a cold but see your GP within a few days just to be on top of it. If you are coughing up phlemy muck, then get to the hospital and tell them you are immune compromised because your cold can very quickly turn to pneumonia.
    I am planning a trip to USA, have you seen anyone come back with issues from flying etc……..yes she has seen many ear, joint and clot issues from long flights, at my next appointment she will design a medication plan for me whilst I am away (in case I get in to any trouble) ie. Increase pred by such and such in the event of joint pain etc. She also recommends that I increase the pred for a few days before flying out (and back) as she has found this to be of benefit to others. Also to wear a face mask each way…..we are organizing some of these from the hospital.

    Wow, what a long post. As you can see, I was very impressed with my appointment (even though my heart didn’t stop racing until about lunchtime) and I am so happy that she will now be my go too person, telling me to call her if I have any problems etc.

    What a wonderful little illness we have
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Wow, thats excellent!

    Makes ya feel so special seeing the head honcho! Dunno if ya saw my post last week when io saw Prof David Jayne at Adds - i bet you're flying as high as a kite.
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    Oh yes Michelle, our little illness is sooooooooo wonderful (NOT). I am most happy that you are seeing this Dr. Hall who seems to know and care. I also have the little boney nodules. I wonder if having osteo arthritis is normal for us???

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    On another forum, that I am a member of, for RA, a lot of them speak about the boney nodules on their knuckles and some have them on their elbows etc.
    I also read on there that someone mentioned that he thought it was as a result of the calcium supplements we take

    Yes, so so wonderful .... of course "NOT"
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Michelle, how does your doc know that the multi-vitamin caused your enzymes to go up? I would think it would be a particular mineral or vitamin in the multi unit. Do you see a naturopathic doc at all?

    You might have to have the gangleon removed. I had one at age 9 and it was quite painful. I had it removed and no more pain or problems.
    Phil Berggren, dx 2003

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    Quote Originally Posted by pberggren1 View Post
    Michelle, how does your doc know that the multi-vitamin caused your enzymes to go up? I would think it would be a particular mineral or vitamin in the multi unit. Do you see a naturopathic doc at all?

    You might have to have the gangleon removed. I had one at age 9 and it was quite painful. I had it removed and no more pain or problems.
    I had a ganglion removed from my right hand when I was 17. Our old family doc said that they used to give it the bible treatment. Since the bible was the biggest book in the house they would slam the ganglion with it and smash it.

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    Michelle, I am glad that you have a more sensitive and sensible doctor now, it makes such a difference having someone you can trust.

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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    Quote Originally Posted by pberggren1 View Post
    Michelle, how does your doc know that the multi-vitamin caused your enzymes to go up? I would think it would be a particular mineral or vitamin in the multi unit. Do you see a naturopathic doc at all?

    You might have to have the gangleon removed. I had one at age 9 and it was quite painful. I had it removed and no more pain or problems.
    Phil, was a B complex vitamin with Magnesium, Iron, Folic Acid, Zinc, Calcium and Ginseng. (I can't take normal ones with vitamin C etc, because my joints become inflammed with Citrus or Citric Acid).
    This was the only thing that I had eaten or taken different over the last few months, so I stopped taking it straight after my May test and the June test was absolutely within perfect levels. I guess it could be just one of the above, but hey, it they are back to normal why test them singularly.

    I don't see a Naturopath, they are very expensive here. I do know of one, an old family friend of my dads and brothers (I think) but I haven't been to him....my husband has.

    In regards to the ganglion, it has gone down considerably since I first had it and my GP at the time was waiting to see if it went down on its own......now, she doesn't want to touch it for fear that it may spark off some problems with vasculitis or the RA.
    Last edited by mishb; 07-03-2012 at 08:10 PM. Reason: spelling
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Hi Michelle,

    Your new Rheumy sounds wonderful, especially after the previous one !! I know exactly what you mean about citrus and joint pain; I didn't put two and two together myself, but I was telling our Practice Nurse about my joints suddenly seizing up and aching, and she suggested leaving out any citric foods and fruits and it has made quite a difference over the last couple years. !!

    I have never had a ganglion (sounds weird) but a friend of mine got an 'orf' - a funny nodule on her hand (name is even weirder ) which the doctor told her she must have caught through being in contact with sheep or goats. The only contact she recalled, was walking through a farm gate when there was sheep in the field.

    Anyway, good luck with everything and hope your ganglion goes soon.
    Fran
    Last edited by Fran; 07-03-2012 at 10:58 PM.

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    Quote Originally Posted by Fran View Post
    Hi Michelle, I have never had a ganglion (sounds weird) but a friend of mine got an 'orf' - a funny nodule on her hand (name is even weirder ) which the doctor told her she must have caught through being in contact with sheep or goats. The only contact she recalled, was walking through a farm gate when there was sheep in the field.

    Anyway, good luck with everything and hope your ganglion goes soon.
    Fran
    Orf?? As per-disposed as we all are to catch or develop rare and strange things I think we should all make a pact to stay away from sheep and goats (lol)

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